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Crest Or Celiac/gluten Intolerance

Wen

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Wen Newbie
Wen
Posted

Wow reading alot of these posts have answered alot of my questions but brought up more. I was 12 when I started having bad GI problems, went to the doctors and was eventually told i had food alergy's wheat, rye, oats, barley, dairy etc...I was 21 when I was diagnosed with eplipepsy after a grand mal seziure. I was 36 when I was diagnosed with bi-polar. I have had bouts of diahrea all my life but passed it off as alleries I did "cheat" as much as I could. It got worst about 6 months ago when I had to stay home from work because of severe diahrea (like water) and I couldn't leave the house. I googled it and found this forum and read all the symptoms of other people and said yes to almost all of them. I went gluten free for a week before going to the GP and found it to be much better. MY GP said I'd have to go back on gluten for testing but if I just wanted to go gluten free that'd be o.k. if it works. My questions...my son has been diagnosed with Mental Health problems, severe anxiety he barely leaves the house, miagraine headaches, muscle aches just no GI problems. How do I convince a 20 year to get tested. He lives at home as he can't work. My other question...my mom was first diagnosed with CREST disease and then they said it was an undiagnosed auto-immune diase that eventually killed her with pulmonary fibrosis. Could this have anything to do with Ciliac Disease?

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jlee2 Rookie
jlee2
Posted

Hi there

I am glad to hear you are feeling a bit better. I think depending on your insurance and where you live you should have the test done. If you haven't been off gluten for too long you might not even have to start eating it again pre testing. If you do, it won't be for long and it will be worth it to have a solid diagnoses. I also think your son should definitely be tested. If you just explain to him step by step the procedure and how simple and easy it really is (sedation and a scope down the throat) and that this could be a chance to really start feeling better he might go for it. I'm not sure how he would respond but has he ever seeked therapy or counseling? It's nearly impossible to get a

Male in their 20's to go but it's worth a shot. Many people do not have GI symptoms of celiac but may suffer pbyscological and neurological side effects. If all else fails since he lives at home try as much as you can to provide him with gluten free foods and see if you notice any difference. I hope things work out for you.

jlee2 Rookie
jlee2
Posted

Also forgot to mention that yes celiac disease is an auto immune disease. It is possible your mum did have it but hard to say if it was linked to cause of death or other underlying problems she may have had.

cap6 Enthusiast
cap6
Posted

wen - had to respond to you as I feel that my mom had celiac also. She was sick on and off for much of her life, was diabetic, had fibromyalgia, dermatitis, joint pain, bruising, canker sore, constitpation.... well, you name it and of course it was ultimately pulmonary fibrosis that ended her life. When it turned out that I had Celiac my greatest sorrow is that it didn't happen sooner as maybe I could have saved her some grief. My son is having trouble (he is 33) and although he sees what I go through - and have been through - he will not change his eating habits. All we can do is give them the example and the info and trust that at some point they will decide for themselves. That is the best that we can do. I send you and your son my best,

eatmeat4good Enthusiast
eatmeat4good
Posted

I saw these symptoms in my son too. He is 16. I knew he would be resistant to the idea of being gluten free, but I had a talk with him about all the symptoms that could be resolved if this were the problem. He intitially resisted, but because I was only buying gluten free food that is all that was available to him at home. The problem was eating pizza or going out with friends of course. I talked with him a few times about how much better I thought he would feel if he tried gluten free and that was his problem. We discussed testing but he didn't want to do it. We had both been to Dr.'s for muscle weakness, fatigue, depression, asthma, migraine headaches, allergies. I found Celiac.com and went gluten free without testing. I didn't require it of him either. I told him he could have all the pop he wanted if he would try gluten free for one week. He made it 4 days then ate pizza. Just those 4 days of having it out of his system and he had a HUGE reaction after eating that pizza. I was grateful for that because it showed him very clearly that this was causing his problems.

Although it was difficult at first, my son is very grateful to know what was making him so sick. He told me he would never touch it again. And he hasn't except for learning about what has gluten and what doesn't. "Mom? Do Poptarts have gluten in them? Cause I ate one at school and got sick." Yes, son, they do. Other than that he has been improving steadily. He is three months gluten free and has become totally different. More outgoing, no depression, actually affectionate and pleasant, is able to jog now and lift weights and is keeping up with schoolwork easily. None of this was possible before going gluten free.

Your son may really want help and you may be surprised. He may be willing to try if you explain all the symptoms it causes and the things it can help. Try talking to him about the responses of others to the gluten free diet and maybe give him things to read, like the lists of symptoms and brief descriptions about Celiac disease.

He is probably miserable with all of the symptoms he is trying to manage and cope with. Hopefully he will listen to you and see results quickly if he gives it a trial.

Just wanted to share my experience with my son. It has really been a miracle for us.

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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